making it up as I go along…literally

inspiration

One year ago we sold our car and braced ourselves for living the next twelve months car-free. I’d love to say this was a purely experimental move, for environmental and social reasons, but the truth is we were skint and couldn’t afford to run a car anymore. So for the past year we’ve been entirely at the mercy of public transport, aside from the occasional lift from friends and family/rare taxi to the hospital.

When we made the decision, I intended to document our journey, from a family who’d always had a car (at least since having kids) to one trying to navigate life without, and I even went so far as setting up separate twitter, instagram and blog accounts specifically to post about our experience. However, after writing two blog posts and taking a handful of pictures of the kids waiting for a bus/train, I discovered a few things…the first of which, was that what we were doing- what we still are doing- is not actually remarkable at all.

I actually knew this already, having grown up in a working class family with parents who didn’t drive. My childhood consisted of bus trips and looooong walks everywhere. So I already knew that going without a car didn’t make us special in any way, so much as remarkably privileged that this was the first time we were having to factor bus times/fares into our daily lives. And although Chris did grow-up with a car, he has always commuted to work on public transport, so for him it hasn’t been such a radical change, although I’m sure he’ll agree that it’s still been a massive pain in the arse in many ways.

And that’s the other thing I discovered- that not only did I feel silly documenting something so very ordinary, but also, journeys were often such an absolute ball ache that the idea of reliving them in a blog post, to debate the pros/cons of taking the train vs the car, was just…well…urgh is the noise that springs to mind.

But, our year is almost up, and I have a new job (yippee), which means a car could soon become a real possibility once again (double yippee) so to mark our ‘year without’, I thought I’d do a basic round-up post of what it’s been like.

CONS

Buses are rarely on time. We live on one of the busiest bus routes in Europe, buses into the city centre are supposed to be every 3 minutes at peak-times. They are not. My frequent experience is of waiting for one for between 10 and 15 minutes, and then having two or three turn up at once. I don’t know how people in more suburban/rural areas manage without a car. It’s genuinely inconceivable to me. The only reason it has felt do-able for us, is being so close to the city centre with it’s multiple tram stops/train stations/bus services.

Public transport is inordinately expensive. A day ticket on the bus for an adult costs £4.30. A family ticket is £8.50. We got a family and friends railcard which has made local train journeys much more affordable, but we’ve yet to use it to go anywhere further afield, because even with the extra money off, train fares are pricey, plus the idea of more than an hour on a train with the kids makes me feel a bit wobbly at the knees.

Which leads me onto my next point very nicely. Motion sickness. I’ve always had it, but thought I’d grown out of it as an adult. Turns out, what actually happened was that I just learnt to drive and never went on transport for more than ten minutes at a time. That’s obviously had to change this past year, and I’ve spent a lot of journeys staring resolutely out of the window and looking very green around the gills.

(me, every time I’m forced to ride on a hot bus/go backwards on a train)

Public transport forces you to interact with strangers. Rude bus drivers that you’re then at the mercy of until you reach your destination. People with differing hygiene standards, and musical tastes to your own. People with no concept of personal space. People who can’t think of a better way to pass their journey than to spend it judging your parenting. They’re all right there, and you can’t get away from them.

Which again leads nicely onto another major con- kids on transport. When we had a car, yes the kids would sometimes ‘act up’ in the back- hitting each other with a Buzz Lightyear, spilling raisins all over the footwell, waiting until I’m in the outside lane of the M60 doing 85mph to tell me that they’re ‘desperate’ for a wee, etc etc. But at the end of the day, they weren’t bugging anyone other than us. Chris could turn in his seat and offer some kind of bribe/threat, I could pull the car off at the next services to use the toilets, whatever. On public transport- when they’re tired, and want to slump across two seats and fall asleep on a commuter train, when they spill food everywhere, when they whine ‘are we nearly there yet’, you’ve got to be prepared with entertainment (no cd player remember!) and snacks, and reasons why they should stop kicking the chair in front, or why they shouldn’t lick the window, and if they need a wee? Well good luck with that.

Basically you have no control. Which for a control-freak is so bloody difficult. Knowing I could leave my house two hours before an appointment and still not get there on time, because I’m not in charge is infuriating and mind-boggling.

Your world feels a lot smaller. The only times we’ve ventured outside of the city limits have been either to visit family and friends, or when we’ve actually rented a car for the week and decided to make the most of our freedom. Most of the time we’ve just bumbled around locally, because anything else is a. supreme effort and b. bloody expensive.

Also, over the winter, when my anxiety was bad and there was a spate of assaults in my local area, I felt totally trapped in my own home after dark. With the car I’d have had no problem nipping out to the supermarket, or to a dance class or wherever, but faced with the prospect of walking places on my own in the pitch black? No thanks.

Weather. It’s unpredictable. It’s generally shit. And when you’re actually trudging through it in the dark with two miserable kids carrying school bags. and PE kits, and a week’s worth of shopping, then you really fucking FEEL IT, in a way that you don’t when you’re dashing between the front-door and the car.

Which leads me onto- shopping. So many people urged us to do grocery deliveries, not perhaps fully appreciating that the reason we gave up the car was because we were TOTALLY SKINT. So paying for someone to drop the shopping off seemed like a luxury that we couldn’t afford. Hence, more frequent shopping trips and only buying what you can carry (which for me, with my CIDP, and generally piss-poor upper-body strength, is not all that much, it turns out.)

PROS

There has to be some…right?! Well- yes. The biggest pro, and the reason we did this was to save money. We’ve probably saved about £300 a month (the cost of car finance, car insurance, car tax, and the annual MOT combined.) We haven’t saved on petrol because the car was really economical, and because that money has been spent on transport instead. So yes, if your car running costs are high (i.e. if you’re paying your car off in instalments, or live in a high insurance area etc) then you will definitely save money, providing you don’t just get taxis everywhere instead of course.

Another pro (I guess?) is that there was a certain novelty value for the first couple of months. The kids had been on buses/trains before but not very frequently, so they were pretty enthusiastic about our transport adventures to begin with, which probably buoyed us a little too. And it’s made me more confident on transport (knowing which stop to get buses from in Piccadilly, and even using the metro for the first time all by myself!)

Environmentally, I figure our impact will have been minimal, but NOT having the car definitely made me realise how many ‘quick trips’ I used to use it for, just because it was there, so that’s something I’ll consciously try to avoid if/when we get a car again in the future.

Which I guess leads onto another pro- which is that health wise I’ve had to do a lot of fucking walking. We all have. So that’s something.

And finally- daydreaming. You can’t do that behind the wheel at high speeds. Long bus journeys, especially if you sit at the front upstairs, jam your headphones in and resolutely refuse to make eye contact with anyone, can be really good for the imagination. I have done so much people-watching this way, and thinking-time is always hugely beneficial for creativity.

______________

So, there you have it. A project I intended to space out over 52 blog posts across twelve months, I’ve just summarised (probably quite badly) in one.

The fact is, if you’re in a position to weigh-up the pros and cons, i.e. you can actually afford to run a car without getting yourself into crippling debt, then to be honest, it’s probably worth it. Unless you live and work in a city centre, and don’t have a driver’s licence, which is possibly the only scenario I could imagine being car-free NOT being a major pain in the ass. But for anyone else- especially people with kids, then I wouldn’t recommend it. Unless you don’t have a choice- in which case, my pros and cons aren’t going to be relevant anyway. Needs must when the devil drives, and all that.

If you’ve read any of my other blog posts, you’ll know I’m not exactly what you’d call ‘succinct’. This is true of my fiction writing too- I’ve never really managed to grasp short story writing, or the idea of flash fiction. Almost all the story ideas I have would require a novel to execute, or possibly even a series of novels. Nonetheless, in an attempt to branch out, and improve my writing I attended a workshop last year on short story writing, and found it really inspiring, so I came away thinking “ok, maybe I can do this after all…” but then after about ten failed attempts, I decided that no, actually, short story writing was clearly not for me.

Fast forward to now, and in the past month I have entered two separate short stories into two different writing contests, and I’m about to submit a third short story for an anthology.

I’m not sure what changed- maybe those ten abandoned stories were a necessary hurdle, like me gunning my creative engine, maybe it’s down to not overthinking it so much, maybe it was giving myself permission to suck and to get it wrong. I don’t know. But I am super excited to tell you that one of my short stories, that I wrote for the Beauty and the Beast writing challenge on Wattpad has made it into the top ten entries! I found out a couple of days ago and I’ve honestly been on a high since. I really surprised myself with how much I enjoyed writing that story, and maybe that shows through, but whatever the reason- having someone I don’t know, who has no vested interest in me say “yeah that’s actually good,” is such a fantastic feeling, I fear I’m in danger of becoming a praise junkie.

The winner of the Wattpad contest will be announced on Monday, but even if it’s one of the other nine entrants, I’ll honestly be chuffed just to have made it to the top ten, and likewise with the other stories I’ve submitted- the joy has really been in the writing of them, and realising that I am capable of executing something in under 1k/2k/5k words and actually enjoying the process (although I won’t lie, editing and cutting words down is harrrrd!)

You can read my Beauty and the Beast inspired story ‘Inner Beauty’ here and the other entries here.

If you’re short on time today then feel free to stop reading now and get on with your afternoon, because to be honest- that’s a pretty good summary of what I’m about to say.

I thought I’d blogged about this issue before, but a quick trawl through old posts didn’t turn anything up, so possibly I *thought* about blogging about this before, but then bit my tongue. Hard. The way I frequently do.

But I’m feeling a bit, umm…sensitive at the minute. After a week in which the kids went back to school and I went back to my fitness regime (that had given way during December to evenings under duvets and increasing volumes of Baileys), my body is protesting, I guess you’d say. Not quite dramatic enough for me to bust out the word ‘relapse’ but enough to mean that I am a quivering wreck- literally. My hands have been shaking near constantly for about three days, which leads to anxiety, which leads to panic attacks, which leads to adrenaline- which REALLY helps*, obviously.

(*sarcasm klaxon)

And the thing is, throughout all this, I can’t get this fucking meme out of my mind.

It’s not the image. Let me repeat, for the cheap seats in the back: IT’S NOT THE IMAGE! I don’t know why I’m even bothering to emphasize that, knowing full well there’ll still be someone out there who thinks I am bitterly opposed to such a powerful image of a disabled person displaying power and strength and all the things we’re told by society, a disabled person can’t have/be. It’s an incredible image. My problem is not with the image. My problem is with the slogan someone has helpfully superimposed onto it.

‘ The only disability is a bad attitude’

Really?

Really?

*raises eyebrow until it lifts off my forehead and floats off into fucking space*

Anybody who thinks that the only thing preventing people from accessing public spaces, education, work opportunities, social events and from taking care of their activities of daily living is their attitude, should refer to the diagram below:

Most people reading this will know why this kind of able-ist bullshit bugs the crap out of me, but in case you’re one of those who doesn’t- here’s the deal:

Three years ago I went from being a busy young mum of two small boys, working part-time nights as a nurse on a neonatal unit, running (ok, jogging) 10ks and generally ‘leading a normal life’ to lying in a hospital bed, largely unable to move.

But the only disability in life is a bad attitude, right?! So I got my shit together and got me the fuck outta that bed and GOT ON WITH THINGS. Because really, it was only my bad attitude holding me back, amirite?!

Umm…no. You see what was actually holding me back, was my body. Specifically my immune system, which had decided my nervous system was a foreign invader and begun stripping all my peripheral nerves of their myelin sheaths. Don’t know what a myelin sheath is? Well, let me tell you- they’re important af. Without them, your nerves can’t transmit signals . So, to be clear- my brain was like: LET’S STAND UP

And my legs were like: …………..

*neurological tumbleweed*

This kind of message, this idea that anyone can overcome ANYTHING as long as they’re DETERMINED, sounds very aspirational and wonderful, but there’s one teeny tiny problem- it’s not true. And it’s damaging. It’s damaging because it makes people- vulnerable, scared people who’s lives might be falling apart, who might be in pain and terrified feel RESPONSIBLE FOR THEIR PROBLEMS.

I know, because I literally sat on my toilet, stared at my legs and thought “Maybe I just didn’t try hard enough last time…come on legs, we can fucking do this.”

I also know because I told myself, in the brief time I spent at home deteriorating rapidly, that I CAN DO THIS. I SHOULD BE ABLE TO DO THIS.

THIS being: EVERYTHING. Driving (yes, I cringe now but I drove around Manchester unable to feel the soles of my feet, unable to change gear one-handed. I could have fucking killed someone but hey, got to admire my can-do attitude right? NO.) Looking after my kids- even though I couldn’t lift my one year old. Dressing myself- even though my hands shook so badly I couldn’t fasten my bra. Walking down the stairs- even though I fell, multiple times. Yes one fall down the stairs was not apparently enough to convince me that I could not actually ‘do this’. And what’s even more terrifying is that I was pregnant. Pregnant falling down the stairs. We all know how this ends of course, i.e. not well. It turned out, to my relief that those falls- particularly the one bad fall I had, hadn’t actually caused my miscarriage, and that the pregnancy was doomed from the start. But I didn’t find that out until a month later. A month is a long time to carry that burden of guilt.

Able-bodied people (because to be honest, I’m pretty sure that’s who images like this are for- to make able-bodied people feel GOOD and INSPIRED and MOTIVATED etc) suggesting that anything can be overcome with the right mentality are not only grossly mistaken but also contributing to the societal idea that disabled people come in two categories:

2. Bitter, twisted people who ‘let their disability rule their lives’.

We all love “Doctors told me I would never walk again but I did!” stories. Not so much “Doctors told me I would never walk again and actually they were right and I still can’t walk but hey guess what I’m still a valid fucking human being and actually not your motivational piece” stories.

Disabled people, sick people, chronically-ill people are told “you don’t look ill/disabled” and on the face of it- yes it’s a compliment. Who the fuck wants to be told they look like they’re about to dodder off this mortal coil?! But on the other hand, it’s a bit of a backhander isn’t it? “You don’t look disabled” i.e. “Well done hiding your disability. God it would be awful if us ‘regular’ folk were confronted by the notion that we’re all just one biological failure away from disability. Thanks for keeping it tucked away there, sport.”

I love an inspirational picture/article as much as the next person. I love stories where people overcome barriers- regardless of what those barriers may be- to achieve things that are important to them. I don’t want people to stop pushing themselves, to stop shouting from the rooftops when they achieve things that they, or other people thought impossible- whether that’s pull-ups in a wheelchair or just wiping your own ass when you’ve previously had to rely on others to do it.

But let’s not kid ourselves that pushing ourselves- that Positive Mental Attitude is the only thing that’s required. For disabled and chronically ill people to achieve their full potential- their personal, individual full potential- not the dreams and goals YOU set for them, but their own, a can-do attitude is only a very small part of what’s needed. Societal acceptance, and wide-scale change is also pretty essential. Psychological input, a strong support network, and acceptance that some things might not be possible. Reassurance that even if it turns out you’re NOT capable of pulling yourself up in your wheelchair, or indeed wiping your own ass. that you’re still- shockingly- a valuable person, who deserves to live and is worthy of time, and space and respect.

Of course, my story falls into the “happy ending” category- so far at least because I did walk out of the hospital. It took time, but I hobbled out on crutches and now my remaining crutch waits in the hall, for a day in the future when I might need it again. Because the reality is- it isn’t a “happy ending” until The End. And I’ll be living with CIDP for the rest of my days, and I’m really hoping I have a lot of those left. There’s no guarantee I won’t deteriorate, that I will remain ‘inspirational.’ Will I be less worthy as a human if I can’t ‘perform’ physically, if I can’t contribute to society in the only way it knows how to measure- labour and profit?

So when I see able-bodied people sharing the above meme, complete with caption (note, not the stand alone image) you should know that I don’t think “how wonderful that you’re celebrating this man’s achievement” I think “Do you even know what the fuck you’re talking about?!”

And if that makes me over-sensitive, well it wouldn’t be the first time I’ve been accused of it. And perhaps you’ll be better able to understand my ‘sensitivity’ when I tell you that I had a panic attack in my bathroom this morning because as I brushed my teeth I caught sight in the mirror of how badly my hand was shaking, and from there it was only a brief leap for my brain to the memory of when I first bought an electric toothbrush (summer 2013) because I no longer had the strength required to move a regular toothbrush around my mouth. Yes, I was really that bad. And it only got worse- the electric toothbrush was a temporary fix, but as my condition deteriorated it became too heavy- I had to use two hands to hold it, and then eventually the concept of brushing my teeth unaided became a pipe dream. But throughout it all, of course, I maintained my positive mental attitude- which only served to make me an utter bitch to be honest, because I felt I should be able to do all the things I couldn’t and if I couldn’t….well I just wasn’t trying hard enough. That kind of pressure is destructive. Just ask my boyfriend who bore the brunt of most of my outbursts

“I should be able to do this!”

“Why can’t I do this?!”

“I don’t want to be like this”

“This can’t be my life”

It’s hard enough to accept you’re not in control of your own body, life, future, without being expected to OVERCOME YOUR BARRIERS and FIGHT YOUR DEMONS and ALSO BE INSPIRATIONAL FOR ABLE BODIED FOLK TOO PLEASE.

So please, stop with the able-ist propaganda. Yes some disabled and chronically ill people might put your complacent asses to shame, but others might be struggling to exist without help, and perpetuating the myth that ANYONE can overcome ANYTHING if they only want it badly enough, is not just insulting, it’s damaging.

The last time I went swimming was the 21st August. I was already having bizarre neurological symptoms at that point but had been told 2 days previously, by a locum GP that I simply had “sciatica” and to do more exercise. Thus, the swimming. Although truth be told, I knew deep down it wasn’t sciatica at all.

I managed 17 lengths in 30 minutes that day, when usually I’d do 20 lengths in about 20 minutes. I kept having the sensation that my limbs were simply not obeying my commands and that I might drown at any minute. Of course with hindsight I now know that’s true. Afterwards I struggled to get dressed and in the end had to walk home bra-less as I couldn’t manage to fasten it without help at that point.

Two days later I was admitted to hospital for the first time and the following week I was diagnosed with GBS, which we all know later turned out to be CIDP, the chronic version.

There aren’t many things I love, that I know I am crap at, but swimming is one of them. Swimming and singing, and maybe other things beginning with “S” too…like err….sailing perhaps?! I wouldn’t know as I’ve never tried.

I usually need to at least hold a half-hearted belief that I’m moderately good at something, to get any enjoyment out of it. Which may explain why I detest cooking and cleaning so much. For reasons unknown that is not the case with swimming though. I can only really do breaststroke, and even then, my technique is abysmal and I’m very slow but I love it. I like that it’s just me, and the water, and that it’s a life skill that makes sense, in case you ever fall into a vast expanse of water and wish to stay alive. I have a hard time understanding sports that make no sense from an evolutionary point of view. Like golf for example.

Swimming raises my heart rate and works my muscles and all the while I feel calm and happy, although I confess other feelings surfaced when someone’s icky disembodied blue plaster floated toward my face this afternoon.

I managed 30 lengths, although admittedly it took me 45 minutes. I still don’t think that’s bad for someone who was staggering around on crutches a couple of weeks ago though. Just being able to go there and get in the pool and not drown is a massive achievement as far as I’m concerned.

Somewhere around lap 22 I started thinking about Dory from finding Nemo and it occured to me that her little song may be the simplest yet most inspirational mantra I could adopt to see me through these tricky times…

JUST KEEP SWIMMING

I’m half tempted to get it tattooed somewhere really prominent so that when the prednisolone makes me feel like shit, or fails to make any difference to my symptoms, or when I am next in hospital attached to a drip and missing my boys, it will serve as a reminder not to give up.